I wanted to add my experience. I suffer from permanent S1 nerve damage after 3 back surgeries at L5-S1. The nerve damage actually occurred prior to any of the surgeries because I waited a mere 5 months to get medical treatment (thinking I could go to the chiropractor and think positive and would get better.) Sometimes people have years before they will have nerve damage, and for others, just a few months. That was me.
Anyhoo....I got my permanent SCS on 1.5.09 and my life has changed. I have lost 22 lbs, can go and do anything I want, can drive 8+ hours and travel, you name it. My body is finally getting back in shape after being reclined 23 hours a day for last several years. The S1 nerve is affected by sitting, standing, walking - really movement of any kind. I had burning/searing pain 24/7. With the SCS, I still have pain, but it is different. Hard to explain. I still do not bend, lift or twist. I have "grabbers/grippers" all over the house to pick things up for me when they fall, since I DO NOT BEND. I do not do a single thing that would cause my leads to break free of the scar down and move. Trust me on that one. But still, I have my life back. I was reclined in a chair for 23 hours a day. The fact that I am up and moving is a God send.
If you have ever sat in a massage chair at a salon, imagine being your own "massage chair" on the inside. That is what if feels like to me. I have buzzing/tingling from my buttocks to my toes and it is the most comforting, awesome feeling in the world. Beats 24/7 burning pain any day. And I am one of the lucky ones that can turn my SCS up just right and get a special reaction, the big "O" that so many nerve damage sufferers lose the ability to experience.
I am still on my long-acting meds, but barely take any breakthrough meds or muscle relaxers anymore, so that is a big decrease in meds for me. I believe we will try to decrease meds overall very slowly. When I turn off the SCS, I have that burning/searing pain. Therefore, I keep the SCS on 24 hours a day.
Regarding the 6+ weeks after surgery. When they say no bending, lifting or twisting, that is IMPERATIVE. You MUST NOT do anything - no lifting arms, NOTHING. My husband shaved my legs, helped me dress, fixed my hair, whatever I needed because I was NOT moving until those leads scarred in place.
During my trial, I came home and in the first day my leads moved down 1 inch, and I didn't even know what I did that caused that. So with the permanent, I seriously did not do a single thing that could possibly move those leads. 6+ weeks of being super careful is SO worth it!!!! Trust me!!!
When I had the trial and permanent placement, the docs (2 different ones) had major difficulties due to scar tissue and what my neurosurgeon calls an "anomaly". I was just glad when they found the "sweet spot" and I was a walking mummy until it scarred in. Even raising your arms ONE TIME can cause the leads to scoot down out of position. That part is frustrating but getting the pain relief is such an answer to prayer if you focus on that it really is doable.
I have the ANS/St. Jude Eon Mini and am very thrilled with it. My pulse generator is implanted in my upper right hip and the odd thing is that I was already numb in that location (I have lateral numbness from hip to toes) and I had no recovery pain from that at all. Totally unexpected and weird. lol
Side effects I have are some nausea if I turn the SCS up high, it is an appetite suppressant (we think) and I eat small meals, much like I imagine a "skinny person" eats normally. lol I am also possibly having bladder dysfunction, although I had this PRIOR to the SCS. We are investigating that more now. Sometimes my bladder just doesn't seem to know how to pee - I have to employ my abdominal muscles to empty my bladder. But like I said, I had this BEFORE the SCS. Just don't know if the SCS is aggravating it, making it worse, etc. If I were to lose all bladder function and have to wear diapers, I am unsure if I would remove the SCS. That is how much pain relief I get. I NEVER want to return to the 24/7 burning pain ever again.
One day I went to turn on my remote control and it acting up and I almost had an anxiety attack. People, I'm telling you, when you find something that relieves this horrid pain, you bond with it!! lol Thankfully, it just needed new batteries.
I feel very blessed that I was approved for this pain management device. I haven't been cured and I'm still on meds, but I'm just fine with that, as that was my expectation. I knew that going in. But to be 42 years old and get to act 42 again rather than 95? Priceless.
Take care,
LovelyIris
